Three times our life was divided into “Before” and “After”…

Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization. 

The Diagnosis

First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)…

“Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in the city, early kids’ development methods, plans for a dance studio, mountain biking and ice-skating.

“After” – plans ruined, search of treatment options and clinicians, fighting with the Ukrainian Health system, and a few years of living with constant pain and tears. Because bone fractures were caused by the smallest thing or simply by walking. And then constant hospital admissions, “plaster casts“, casts, and new fractures…

Only meeting with other parents of OI-kids and adults with OI encouraged me not to despair.

The victories of the OI-organization

And again it happened.

“Before” implementation of OI treatment in Ukraine – constant bone fractures and tears of kids…

And “After”, when in 2019 all our dreams came true: early diagnostics, free pharmacological treatment, purchase of extremely expensive telescopic rods by the Government. All these had been achieved by our daily hard work.

The War

On 24th of February, 2022 again divided life into “Before” and “After”…

Again that awful feeling of helplessness and despair. The War has taken away the opportunity of Ukrainian children and adults with OI to receive high-quality medical care completely. Our healthcare system that had worked like a Swiss clock from the very first consultation to the post-surgery rehabilitation of OI kids, was destroyed by the Russian army…

I remember calls and texts from parents of OI kids with the same question: “What’s next?”, “What will happen to the children?”
Certainly no one from our community imagined returning to the horrors of life “Before”, with absence of treatment and constant pain from numerous fractures. The main hospital for the treatment of OI in Ukraine with medical professionals with experience in OI, was located in Kharkiv. And Kharkiv was the first city to fall under massive merciless attack. The Institute of Spine and Joint Pathology was evacuated, doctors fled to different parts of Ukraine or abroad, running away from the War…

Help from OIFE & the OI-community

We had to find new ways..again

First OIFE helped us. We were in a 24/7 contact with OIFE representatives. Thanks to the clear coordination and help of Karina Prokopiuk, who lives in Denmark for a few years already, the issue of finding clinicians in the EU to help Ukrainian OI refugee families. In addition, OIFE provided contact persons in every EU country who coordinated communication with doctors on-site.

All Ukrainian children and adults with OI who fled Ukraine due to the War, found help in the EU.

But our medical systems differ, so the terms of consultations, additional examinations, use of other bisphosphonate types and etc. delayed the treatment process. Also in contrast to Ukraine, surgical treatment in the EU is provided only in critical situations, and scheduled surgeries are planned 2-6 months ahead. All these nuances were unacceptable for most of Ukrainian parents. There were some misunderstandings that Ukrainian Association of Crystal People tried to solve if possible. Overall, anyone with a rare disease while outside of Ukraine, should expect a long process of diagnosis and treatment prescription, as it is connected to specificity of local medical systems operation.

The project

However, the opportunity of getting medical care outside of Ukraine has not covered all needs of medical care for all Ukrainian OI people, as many of them still stay in Ukraine. This is why our organization has joined the project of Internews-Ukraine “Guaranteed” (Ukr. “Гарантовано”) to do an effective communication campaign on timely OI diagnosis and effective treatment and medical care in Ukraine, and to increase awareness about this rare disorder, which is filled with myths and fake news.

Between May and July 2022 Alyona Romaniuk found the most interesting, recent and useful information about diagnosis and treatment of OI. In addition she posted stories from famous and brave people with OI. Currently, in terms of the project, Ukrainian OI people can get free consultations from leading OI experts, including Sergiy Khmyzov. Together with Mariya Kalashnikova we help to orient people in treatment and diagnosis options in Ukraine and abroad.

The conference

One of the most interesting events of the project was the first online conference on “timely diagnosis and treatment options of OI” held on 17th of August, 2022, where talks were given by leading OI experts from Ukraine and EU. OIFE was represented by vice president Dace Liepina.
You can watch the recording in Ukrainian language in the video below.

So already “After” start of the war, we try to move on and live on. Despite the war and all new challenges, so that kids and adults with OI can receive the vital treatment they need. We are fighting to save the progress in the treatment of OI in Ukraine that was achieved “Before” the war.

Resources for Ukranian refugees in Europe

From the 1st of June 2022 Rare Diseases Hub Ukraine (https://www.rarediseaseshub4ua.org) (RDHU) is functioning from Hospital San Joan de Deu in Barcelona with the collaboration of EURORDIS, ECHO and the European Reference Networks (ERNs). There is a Command Center with Ukranian speaking staff that can receive the needs of the Rare Disease Ukranian Patients or Clinitians by mail, phone or the app and a team of Clinicians. The function of the Hub is to connect with a provider of the solutions, not to provide the solution itself. There is a strong support of the European Commission and all the Rare disease stakeholders that will help bring solutions.

We also recommend the resource page of EURORDIS resource centre.

You can also contact OIFE for advise and support on email office@oife.org. We have volunteers who can communicate in Ukranian language.